Tiffany’s husband defines “caregiver” in his story about supporting her through her diagnosis with colorectal cancer. He says, “My role was to slow her down and be the voice of patience and calm. I had to say to her, ‘You are unique. You’re not a statistic.’”

It’s anecdotes such as the one above that make me wish I knew Deborah J. Cornwall’s “Things I Wish I’d Known: Cancer Caregivers Speak Out” existed when my mom was diagnosed with and treated for breast cancer. . . . The relatable thoughts and experiences that fill the pages of Ms. Cornwall’s book make this book a must-read for people who find themselves caregivers as soon as their loved ones utter the words “I have cancer.”

. . . Woven together, these stories provide the reader with an invaluable resource. As Ms. Cornwall says, “There’s no better way to learn about dealing with cancer as a caregiver than hearing other people’s stories.”

The aptly-titled Things I Wish I’d Known: Cancer Caregivers Speak Out, by Deborah J. Cornwall, is a welcome resource for those struggling to help the people they love who have cancer. . . .

Cornwall does a good job describing what caregivers, as well as patients, go through, and what one can do to stay afloat during the grueling process. The caregivers in her book mention a void after death — but there is also a void after a successful outcome. You spend all your time and energy in the fight to overcome cancer and it becomes your center. When that fight is done, you are left seeking a new center. The people in this book share ways to do that, and to commit to living life to the fullest. Hearing it in the voices of the caregivers themselves is particularly powerful. . . .

No matter what, being a caregiver means going on a very rocky journey — and Cornwall’s book is a thoughtful and excellent travel guide. It will give you ideas of how to cope and how, even in the darkest most frightening moments, to find your way to grace and resilience.

When a person is propelled into the role of caregiver for a loved one with cancer, life is forever changed. Normalcy disappears. Professionally through her work with the American Cancer Society and personally with her own breast cancer diagnosis, the author of Things I Wish I'd Known: Cancer Caregivers Speak Out is well qualified for this topic. But it is Deborah Cornwall's interviews with 86 caregivers and their experiences that give a voice to this compelling and practical work.

This book is reminiscent of the classic What to Expect When You're Expecting for new mothers. Through stories of others who have been in similar situations, cancer caregivers are provided with thoughtful guidance as they make their way down a road that none of them anticipated and for which most of them are unprepared.

Cornwall weaves the stories of earlier cancer caregivers throughout the book as she imparts information and advice . . . . The single most important advice shared and agreed upon by both Cornwall and most cancer caregivers is to "trade up" if you have a choice of hospitals and do whatever is necessary to get the best medical team. . . .

Things I Wish I'd Known will be a welcome addition to the collection of a medical, consumer health, or caregiver's personal library.

“Things I Wish I’d Known” is the result of interviews with 86 caregivers sharing their frustrations, advice on cutting through bureaucracy and inefficiency, their insights into developing an honest relationship with cancer patients and their families, coordinating help, coping with insurance and medical debt problems and more. It’s worth reading just for the advice on insurance snafus, especially because insurance companies + paper glitches = “insurance churning,” a fairly common problem that the Affordable Care Act (Obamacare) should (but doesn’t always) prevent.

Claire Martin, January 15

"Caregiving: Read All About It"

As any caregiver can attest, one of the main challenges of taking care of a cancer patient (or anyone battling a difficult chronic illness, for that matter) is working with the unknown. Each caregiving experience is unique, and each caregiving session is often unpredictable. Caregivers can be rushing around at 90 mph during one frantic session, or things can settle down to a surprising calm—to the point that the caregiver may actually find himself or herself with some unexpected spare time.

Reading is the perfect activity for such moments, and for several reasons. Books are perfectly portable (including today’s electronic kind) and can easily make the trip to hospitals or doctors’ offices, where the order of the day is often “Hurry up and wait.” Furthermore, reading is a quiet activity that the caretaker can enjoy fully even while sitting at a sleeping patient’s bedside. And now there are even more reasons for caregivers to enjoy reading—because caregiving itself is the subject of several fine books, including a notable new title that appeared this year.

20/20 Hindsight

. . . Things I Wish I’d Known: Cancer Caregivers Speak Out is part manual and part oral history, a combination that suits this subject well. Her book shows she has a firm grasp on the various balancing acts a caregiver must perform on a daily basis. Topics include getting a clear diagnosis, helping patients make treatment decisions, accessing available resources (including clinical trials), managing financial and legal issues, and how the caregiver can maintain his or her own emotional well-being while assisting a cancer patient.

Deborah conducted more than 80 interviews with cancer caregivers and includes much hard-earned caregiving wisdom. The book is organized into self-contained chaptersthatcanbereadentirelyoutofsequence,asmartmoveforatextwhose intendedreadershipmayneverbesure exactlyhowmuchreadingtimetheyhaveatanyparticularmoment. . . .

We often describe caregiving as a journey. Sometimes that journey leads to a signpost cancer caregivers call “Welcome to Cancerland.” It’s nowhere anyone wants to be, but many who have travelled down its main street are willing to help newcomers get oriented. Ms. Cornwall is a breast cancer survivor. She imparts both clinical information and words of experience from the over 100 cancer caregivers she interviewed. This book is ultimately a caregivers-helping-caregivers manual. From getting a clear diagnosis, to making treatment decisions, help in finding the “new normal” and dealing with the difficult end-of-life discussions, you’ll find real-world advice and answers here. This book is also a reminder to caregivers that you are stronger than you think you are. Learning from others who have “been there, done that” will help you avoid as many “I wish I’d known that!” moments as possible, which ultimately makes the stay in Cancerland easier to handle.

NFCA CCAN Representative Liz de Nesnera, December 2012

﻿﻿

i

Deborah conducted more than 80 inter-views with cancer caregivers and includes much hard-earned caregiving wisdom. The book is organized into self-contained

Starred Review, December 1, 2012

Having served for more than 20 years as a leadership volunteer and board member of the American Cancer Society, Cornwall has a wealth of knowledge about cancer patients, survivors, and caregivers. The stress of caregiving is the main topic of this comprehensive book, and she discusses how to advocate for one's patient, help children with cancer, understand "pull-aways" among family and friends, and manage expectations for medical professionals. She includes helpful chapters on seeking normalcy and enjoying time together before a loved one's death. A much-needed support tool for an ever-growing portion of the population.

Caring for a loved one with a serious illness is a gauntlet of emotion. "Things I Wish I'd Known: Cancer Caregivers Speak Out" by Deborah Cornwall is a compilation of hundreds of stories about loved ones who've cared for those with cancer and what can be shared to help relieve the burden for those who are struggling with their loved ones when faced with their own life's problems. "Things I Wish I’d Known" is a strong and much recommended pick for any collection catering to caregivers.

"Wish I’d known that!” is an exclamation that Deborah J. Cornwall’s Things I Wish I’d Known aims to eliminate, easing some of the frustration for cancer caregivers by providing them with information and resources to navigate their uncertain and emotionally charged experiences supporting others. Although Cornwall speaks directly to caregivers, this book may also be useful to cancer educators and counselors working with families experiencing cancer of any variety or severity.

Cornwall is a cancer survivor and has worked as a volunteer, consultant, and on the board of directors of the American Cancer Society. She interviewed eighty-six individuals whose caregiving experience ranged from four days to twenty-three years. Cornwall incorporates their voices into the text, making her advice more powerful. Since these accounts are italicized in the text, thumbing through may lead a reader to a memorable story. Judy’s husband, for instance, recalls his breakdown in the breakdown lane of the expressway and the state trooper who gave him the time and space to deal with his emotions then made sure he got home safely. Reading these stories is like being part of a 24/7-support group.

Things I Wish I’d Known does not need to be read sequentially. Chapter titles will clearly lead a surveying reader to the part of the book he or she needs. Chapters address the stages of both a patient’s and caregiver’s journey. The first five focus on dealing with the diagnosis. This section overflows with practical advice. For instance, Cornwall doesn’t just advise asking questions, she provides important questions to ask. Chapters six through eleven deal with issues connected to treatment. True to the focus of the book, chapter eleven is dedicated to the physical and emotional health of the caregiver and uses academic research to enhance the voices of the author and interviewees. The last section of the book also draws on academic research to discuss end of life choices. Cornwall never shies away from the most difficult aspects of her topic.

Many of the interviewees dealt with very serious situations—late stage, rare, or unusual cancers. In spite of these dire circumstances, the underlying message of this book remains positive.